Monday, 30 November 2009

The two largest societies in the field of MS are the MS Society (with approximately 40,000 members) and the Therapy Centres who are part of MSNTC (with approximately 12,000 members). Attendees at the Open Meeting heard about recent new collaborative developments between these two charities.

Under this new initiative, the two charities will look at the ways in which a sample of local MS Therapy Centres and MS Society branches are already working together to improve the quality and range of services available to members of both organisations. It will identify not only the 'success factors' but also those obstacles that have hindered co-operation. The aim is to define a set of criteria which will help MS Therapy Centres and MS Society Branches to improve their working relationships and provide more coordinated help for the people that both organisations exist to serve.

We are delighted that our Patron, Martin Salter MP will organising his own team in the Reading Half Marathon Corporate Relay Challenge on Sunday 21st March to raise funds for the Centre. This is a great local event and the Berkshire MS Therapy Centre will have lots of marshals to offer support and urge the runners on.

Friday, 27 November 2009

I found out about this site from the November/December edition of Pathways magazine produced by the MS Resource Centre. " This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone."

This link features accounts of patients in California who have undergone CCSVI treatment among other treatments.

Thursday, 26 November 2009

We have had several MS Therapy Centres asking about our view on Chronic Cerebrospinal Venous Insufficiency - CCSVI. Various articles and news clips have been published on the net. Prof James has sent an email to the author Dr Zamboni to find out more about the surgical procedure and we will keep you informed of any developments.

The recent publicity given to the work of Professor Paolo Zamboni has highlighted a growing disaffection with the concept of ‘auto’ immunity which has dominated MS research and treatment for more than half a century. Zamboni trained as a vascular surgeon specializing on problems of leg veins, which often leak as we age, allowing red blood cells into the surrounding tissues. When the red cells break down they liberate iron which causes damage to the walls of veins and the surrounding cells. Similar damage was found in the veins in the centre of the typical ‘plaques’ of multiple sclerosis as long ago as 1863. However, the use of an animal model for MS research after WW2 led to the concept of auto immunity where, it is claimed, the immune system attacks normal tissue. Despite sixty years of research there is no evidence of this and it remains just a theory. What is certain is the damage in MS involves veins and inflammation and Professor Zamboni has focused on these proven observations. He noticed, when using ultrasound scanning of the neck in a Multiple Sclerosis patient, that blood flowed the wrong way in a vein and also that the vein appeared to be constricted. After more investigations he has used the same procedure used to stretch arteries in the heart to relieve the vein constrictions. Several patients have found the procedure beneficial, greatly reducing their symptoms although stretching the veins will not affect existing scarring. There has been no indication of why the veins constrict, although increased ‘reactivity’ of blood vessels has been reported before in MS patients. Professor Zamboni’s work has highlighted the importance of the blood-brain barrier. Oxygen is responsible for the genetic control of inflammation and lack of oxygen has been shown in affected areas in MS patients by brain imaging. Neurologists are likely to remain sceptical of vein stretching until a ‘controlled’ study is done in which a sham procedure is used and compared to a group of matched patients who have the real procedure undertaken.

"Blood that remains in the brain too long creates a delay in deoxyginated blood leaving the head ("slowed perfusion"). This can cause hypoxia, a lack of oxygen in the brain. Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier."

I've sent a communication to ask what Professor Philip James (Our specialist Oxygen Therapy Adviser) thinks about the idea. I will publish his thoughts on the blog as soon as I hear back from him.

Monday, 23 November 2009

"In August, I received a message asking me what I thought about CCSVI in multiple sclerosis. I had the same reaction most of you did when you read the title of this article – “What the hell is CCSVI?” A Google search told me it stood for “chronic cerebrospinal venous insufficiency” and a PubMed search led me to a handful of papers on CCSVI, all authored by an Italian vascular researcher/surgeon named Paolo Zamboni."

Royal Mail and Trading Standards Office are making people aware of a postal scam, especially with Christmas fast approaching.

Following scam:

A card is posted through your door From a company called PDS (Parcel Delivery Service) suggesting that they were unable to deliver a parcel and that you need to contact them on 0906 6611911 (a Premium rate number).

DO NOT call this number, as this is a mail scam - originating from Belize.If you call the number and you start to hear a recorded message you will already have been billed £15 for the phone call.

If you do receive a card with these details, then please contact Royal Mail Fraud on 02072396655

Monday, 16 November 2009

Early diagnosis of multiple sclerosis can change the lives of people living with this chronic disease of the central nervous system.

"Today, there is a huge urgency to make the diagnosis because we know that early and aggressive treatment can alter the course of the disease," says MS specialist and University of Alberta assistant clinical professor Dr Brad Stewart. "Back 15 or 20 years, diagnosis was less urgent because we had nothing to offer the patient."

Thursday, 12 November 2009

The Director of Public Prosecution (DPP) has issued guidelines clarifying the issues that will be taken into account when deciding whether or not to consent to the prosecution of individuals who assist someone to die, including when people have accompanied loved ones abroad for an assisted death.

These issues are now open for a public consultation period that ends on 16th December.

Why we need these guidelines

Assisted dying for terminally ill people remains a criminal offence in the UK and the decision whether to prosecute currently rests with the Director of Public Prosecutions (DPP). At present, it is not clear on what basis the DPP will decide whether or not to support a prosecution. This ambiguity places further and unnecessary pressure on those suffering from severe and terminal illnesses or conditions, and their loved ones.

Background

The guidelines are being prepared as a result of the prominent case of Debbie Purdy, a multiple sclerosis sufferer, who recently won her case in the UK’s highest court. The judgement required that the DPP publish clear guidance, showing when it would or would not prosecute someone for assisting someone to die.

This is not a change in the law; assisted dying remains illegal. However this does represent a significant, and positive change to the present situation.

The law at present is fundamentally flawed; it does not make a distinction between those who maliciously encourage suicide and those who compassionately accompany a loved one abroad to die in a country where assisted dying is legal.

Why your views matter

It is vital that the consultation receives an accurate and representative view on the subject of assisted dying. Most importantly, the principle that guidelines are required should be positively acknowledged.

It is really important that as many people as possible who are in favour of having clear guidelines on this issue respond to the consultation. We know that anti-choice groups will be responding to this consultation and it would be very negative should their minority view have a disproportionate influence on the outcome of this consultation.

The consultation consists of nine questions listing a number of factors in favour of a prosecution and against. It gives respondents the opportunity to agree or disagree with their inclusion, weight them in accordance with priority, and offer further suggestions.